I officially gained a whopping 25lbs after all my treatments from May through December. For many people, this may seem minor, for others it is shocking. I am surprised at how my body reacted to repeated increases in prednisone. The weight was not evenly distributed. It ended up sitting around my stomach, love handles, butt and thighs. For a size comparison, I went into the hospital a 4. I am now stretching a size 10! Weight issues seem to go on the back burner for rare and autoimmune disease patients, but I want to bring attention to it.
I truly believe weight, self esteem and mental health go hand in hand when dealing with serious medical conditions. We constantly hear how losing weight is good for your health, but what about mental health? How about looking in the mirror and feeling good about yourself? This is something I don’t see being discussed openly on social media. It is difficult to explain to people how I feel when my clothes don’t fit. I also feel embarrassed to say for the last 8 months I have been living in spandex leggings, which is all I can fit in. It is not economically feasible to buy myself a whole new wardrobe just to wear for a few months until my body starts to go back to normal.
My hematology team has been really great about discussing diet, exercise and energy levels with me in hopes of combatting my weight gain. Unfortunately, not everyone is as lucky and many patients have to tackle it on their own. I have say that keeping a food dairy and purchasing a pedometer or fitness tracker really can keep things in perspective. Something as simple as walking for 15 minutes can make a huge difference in how you feel! I also believe walking is the gateway to good fitness habits, especially since it requires few spoons.
I’d like to see weight-related issues brought up more in both the rare and autoimmune disease communities. After all, our weight can play an important role in how we manage our conditions. When my body started rapidly changing, I was looking for information and stories from other patients. I wanted to feel “normal” in the sense that other people had suffered from the mental part of nasty treatment-related weight gain. I came up empty-handed, of course I spoke with people trying to lose weight, but their mental state was completely different. I was already hating my body for trying to destroy itself. Learning to accept my rare disease and try to fix my size are extremely challenging, and something that very few people can truly understand.